Every state or city provides different levels of support to it's children with special needs. I live in one that lays it on thick and then some, especially if your child has a diagnosis like Down syndrome. Mermaid has been receiving Physical therapy, Speech, Special Instruction, and Occupational Therapy each twice weekly for thirty minutes. I'll do the math for you = 32 x monthly (plus clean up, plus after-chat, plus delays, plus occasional no-shows without warning...). If we cancel a session for an outing, we have to make it up later increasing the amount of therapy on another day. Mermaid has four sessions in one day at these times. We're essentially tethered to the apartment.
Sure, her four siblings have had to sacrifice opportunities for field trips, classes, play dates, etc. We've all relinquished some flexibility for a good cause. Mermaid has progressed continuously. We love to welcome her wonderful therapists into our home. They counsel and encourage us. They have been willing to meet us at the homes of friends, at the playground, or at the park. They are constantly thinking of how to challenge Mermaid next. They are experts in their fields and really nice people, too. Seeking to balance all of this good stuff with the downside in a way that best fits our family's needs and allows Mermaid to experience the variety and wonder of the great wide world in person, we decided to cut back therapy by 75%. That's 8 visits monthly. We are an aberration in the system. Nobody downsizes when they are "entitled."
This quote from Ann Sullivan inspired me:
"Let him go and come freely, let him touch real things, and combine his impressions for himself, instead of sitting indoors at a little round table, while a sweet-voiced teacher suggests that he build a stone wall with his wooden blocks, or make a rainbow out of strips of coloured paper, or plant straw trees in bead flower-pots. Such teaching fills the mind with artificial associations that must be got rid of before the child can develop independent ideas out of actual experiences."
We've been on the "sleek" schedule since August and it has been fabulous! Mermaid continues to progress at a steady rate. Our language-rich climate at home coupled with increased "actual experiences," has allowed Mermaid to experience a language explosion. I believe hands-on experiences are the most significant for all of my children, but especially Mermaid. We've all enjoyed the freedom of getting out of town, out to visit family, out to the beach, out to playgroups, out... just out. New environments always motivate our curious Mermaid to develop skills or add new words. As a home schooling family, this works for us. Everyone has to calibrate their own definition of balance. Sometimes it's hard to get what you need. In our case, advocating for our child and our family means taking less of what is offered to have more of what we want.
